Monday, March 14, 2016

Of course, the first thing I did when I saw Eli Sunday was take a picture, and he said, “Aw man, pictures?! Daddy never takes pictures when he’s here, except of the animals at the zoo.” The animals at the zoo. Like we care anything about documenting animals at a zoo right now. I did receive two pictures of Eli from Vic in the last two weeks that he was here, so credit where it is due.

I’m so happy to get my hands on this little Rock Star! It’s always bittersweet leaving the others, or leaving Eli, it depends on if the road leads in or out. Torn in half, smile or cry - I do both for mos of a trip. But, I will see them next week when they come
for spring break, so that helps. And, I was so relieved to see Eli with my own eyes! He appears to be doing very well. We haven’t noticed anything from treatment yet, although he has only had three sessions of radiation. He seems great. What the cancer is doing, we can’t know, but to look at him, as usual, one would never know except that all of his hair is gone. He had some wisps, but I shaved all of that off tonight to help him look a little cleaner. He was disappointed for me to do it, but to me the little wisps look sadder than a full out bald head. I told him that he looked like Lex Luthor. He even ate an entire subway sandwich, bag of chips, yogurt tube, carrot juice, and ice cream sandwich for supper tonight, not a lot of lunch, but, still very good for him.

I’m looking for unique things to do that are no more than an hour away while just he and I are here. I thought me might try to catch a baseball or softball game at Augusta University. He protested a bit, not a sports guy, but I may still try. I wrote the Augusta Country Club about The Masters, just to see if we might could make an autograph session, but I don’t think he would be very tolerant of standing at a hole if we got the chance to have tickets. He would never understand the significance of it. I also wrote a large electric vehicle manufacturing company (golf carts, etc.) here to see if they might do tours. There is a Kellogg’s manufacturing
plant, that I emailed to see if they do tours. There is a museum here that we want to go to with the others, and a park along the canal, but Eli is not one to enjoy hiking or outdoor activities. I’ve checked for car shows in general, and car museums, and there is a small one about an hour away. There is a local mustang club here and in Columbia. We missed their monthly meetings, but I sent a message to say hello, and to ask if maybe they knew about any car shows that I might not know how to find. I checked for a playhouse, but they don’t have anything until May. That’s about it. Radiation treatment takes about 10 minutes, 5 days a week. I'm sharing pictures of him wearing the radiation mask that gets screwed down to the table for treatment. I would freak out. As I've said before, I don't even like my sheets tucked in. They would have to slap me with a heavy club. St. Jude didn't let me take pictures,
especially of anything inside, I snuck a few sometimes of things, but I never saw him prepare for radiation. He laid his glasses to the side, hopped right up on the table, and positioned himself to be bolted down. Sadly, it's not his first rodeo, but that's it for that. Then he takes pills at home (here), he goes to Physical Therapy twice a week, which he loves, and he gets bloodwork done once a week. We will also see audiology again this week, trying to talk him into using hearing aids.

We are still looking for sponsors for the car show materials, but I need to know yesterday because I’m about to start doing the artwork for signs, posters and shirts. Message me for a “menu” of prices. It is only two months away. Help us share in car clubs, and automotive groups.

Please, add Jake in the UK to your prayer list. I’ve followed Jake for a long time and he is not doing well. I think the palliative treatment he was on finally gave way and he has taken a bad turn. He is a teen that has been fighting relapse for a long time. Also, for Preston who had his first seizure due to the inflammation from extremely aggressive relapse. They are in the Northwest, I think in Washington state, and are trying to get to MD Anderson quickly. And, to correct something I told some of you in person about a little boy here that is on the same trial as Eli. A boy was sent to ICU in Atlanta, in an emergency situation from inflammation, last week, and I thought it was the other boy on the radiation arm of the trial like Eli, but it was not. It was a boy who is just getting the trial drug plus chemo, no radiation. Still alarming, but I just wanted to correct that. The mother of the first boy, his name is Coulter, said they are having good results from the treatment. I didn’t talk to her, so I don’t know what “good results” means (is it that tumors are shrinking, or the treatment is not causing any symptoms, etc. Vic talked to her, so I don’t have details.... but we do have pictures of zoo animals). Again, he is not medulloblastoma, but is another kind of brain cancer. Also, prayers for Quinn in Birmingham fighting a rare form of fourth ventricle cancers (medulloblastoma is a fourth ventricle cancer, or in the PNET family), and recently having to change treatments. Other names popping into my head are Chandler toughing it out in Memphis; Emma, from our hometown, who has been in Memphis for many months now, and battled through some dire hours; and Leah from home that had scans today. We rejoice with our friends the Crowes, who do so much for us and for St. Jude, in the news that Dylan is basically cured, seven years out from treatment for leukemia.

Eli shirts that were ordered shipped on Friday, so expect those. Maybe we can have an "Eli Blue Shirt Day" in April when we head home.

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